Access and validation

Governance details

Documents or webpages that describe the overall governance of the data source and processes and procedures for data capture and management, data quality check and validation results (governing data access or utilisation for research purposes).

Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

No

Access to subject details

Can individual patients/practitioners/practices included in the data source be contacted?

No
Event triggering registration

Event triggering registration of a person in the data source

Birth
Immigration
Residency obtained

Event triggering de-registration of a person in the data source

Death
Emigration

Event triggering creation of a record in the data source

Contacting health-care providers including GP and hospital visits
Data source linkage

Linkage

Is the data source described created by the linkage of other data sources (prelinked data source) and/or can the data source be linked to other data source on an ad-hoc basis?

No

Linkage description, pre-linked

Norway has a universal public health care system consisting of primary and specialist health care services covering the inhabitant population. Many population-based health registries were established in the 1960s with use of unique personal identifiers facilitating linkage between registries.

Linkage description, possible linkage

We harmonized data from the following registries: the Medical Birth Registry of Norway (MBRN), the Norwegian Prescribed Drug Registry (LMR), Norway Control and Payment of Health Reimbursement (KUHR), the Norwegian Surveillance System for Communicable Diseases (MSIS), the Norwegian Immunisation Registry (SYSVAK), the Norwegian Cause of Death Registry (DAR), and the National Registry (NR). Linkage between the registries was facilitated using project-specific person ID generated from unique personal identification assigned at birth or immigration for all legal residents in Norway.
Data management specifications that apply for the data source

Data source refresh

Yearly

Possibility of data validation

Can validity of the data in the data source be verified (e.g., access to original medical charts)?

No

Data source preservation

Are records preserved in the data source indefinitely?

No

Approval for publication

Is an approval needed for publishing the results of a study using the data source?

No

Data source last refresh

Common Data Model (CDM) mapping

CDM mapping

Has the data source been converted (ETL-ed) to a common data model?

Yes

CDM Mappings

Data source ETL CDM version

5.4

Data source ETL frequency

6,00 months

Data source ETL status

Completed